A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Friday, September 9, 2011
Parenting Eeyore
I bought old replica print copies of Milne's original drawings, treasured and revered. I touched the cover lightly most nights when trying to become pregnant (and trying to remain sane).
I was a Pooh Bear girl. I carried a larger yellow bear with me on holiday in Rarotonga and he came to many dr appointments, tucked into the back of the car, awaiting whatever medical disaster that was about to manifest. I had grown up on a serious diet of yellow bears. I did not consider him dumb, as many people often refer to him as, but that of a wise, mountain bound sage. Growing up, I had a wonderful Pooh Bear night light that played the Winnie the Pooh song. You twisted the honey pot to release the chimes. I had a Pooh Bear print pillow strapped to my bottom as I learned to roller skate and broke my tail bone.
While Tigger grew massively popular in the 90s, I remained true to my honey obsessed inner talisman. I was and am my own version of Pooh Bear.
However, I married my own version of Rabbit. And Rabbit didn't believe in setting up a nursery, too worried about the cost and whether it would impact the home's value. Over time I had accumulated various Pooh Bear toys, an entire set of characters in a garden theme released by the Shell station years before.
I made do with what I could, being on a tight budget. However, I knew my child was going to be a Pooh Bear, possibly a Piglet or a Tigger.
I hadn't expected Eeyore.
When she was a few weeks old, I would place her in the bouncer with the dangly toys hanging to encourage her to whack and kick them. My brilliant child had amazing hand eye coordination for someone who didn't sleep. At all. Ever.
I propped toys on the top of the dangly toy bar so they would look down and and her and she'd be surrounded by smiling faces, as my own was often covered in tears.
The one she took the most like to was Eeyore. She would smile to him and coo to him. I remarked that my child was an Eeyore, bound to grow up into a dark grey legacy of pessimism and stoicism. My supportive mother-in-law suggested it was because he had big, alert eyes. But I knew. I ruled my life by the wisdom of the Bear, how could I turn my back on the wisdom my daughter was displaying.
And she has always been an Eeyore. Contrary, tart, bitter for her age, afraid of emotion and easily embarrassed by them. She would accept life better if she were a robot, by her own admission, free of emotions and cares.
She carried that Eeyore around for quite a while until she developed her Barbie obsession. Once Eeyore went into the dryer and his mane frayed, she lost interest in him as he was now a bit more mad scientist than sad loner.
Recently we found the tropical holiday sharing Pooh Bear. When we moved from our large, warm designer home into the cold, barren and (I shall refrain from calling it a dump) certainly smaller home, a lot of our goods went into the garage, to be lost for years. Pooh Bear has now been brought into our active lives. He's had a bath, hung by his legs to dry, cooked many dinners and said many good nights, but the girl remains staunchly an Eeyore.
It's been a difficult week for us. In the morning she wakes, often happy and chattering away, but comes down the stairs to revert into an angry, contrary and anxious child. She screams and yells. Both parents desperately try to reign in any impulse to yell and scream. Both give encouragement to one another to push it down, take a breath and re-emerge patient, kindly, loving.
It is the way I wish I had been parented. The urge to smack, yell and kick are growing inside. It is all I know. This is a foreign territory. I have parented as a gentle, kindly, loving parent for so long, much to the amusement of parents who find gentle parenting a fallacy.
Biblical verses about rods and time-outs and how hitting did no one any harm get thrown my way daily. I find it irritating as I don't begin to preach to you about your downfalls as a human being, but it's fine to 'correct' me as you see fit. That's ok, you're going to die a horrid death in my next novel. ;)
I believe you can parent gently. I believe you can parent with an open heart. But I also realise you will, like I did this morning, hit a huge wall. There comes a point where you love your child but you don't like her right this second. When time-outs don't work as you don't have all the time in the world to address every issue.
When parenting a child with Autism doesn't work with your parenting style, or any parenting style really.
I shut down this morning. I just couldn't do it. My body hurt and it hurt to physically push myself down the stairs. And the child who had been happily chatting away to Pooh Bear and I was now a sulky, dark, angry child who refused eye contact and yelled.
I let my husband down. I just walked back to bed and covered my head. I was physically unable to do it. Emotionally broken. I tried to cry, to yell and scream but I was suddenly hoarse, unable to speak. I opened my mouth, pushed with all my might and nothing. I was robbed of motivation. I could't even force myself to get up to go to the toilet.
Eventually I was able to move. To shed tears of frustration. To realise that living with a child that is completely emotionally out of control is hard. Here we are debating whether to put her on an antidepressant and so many people have opinions. So many voices of dissent. So many 'I could do it better than you's.
Other Autism parents say we need more structure. Structure falls blatantly short when the child is stuck in a cycle of screaming and refusing to allow you in. But, I will try. Our house is a mess. It always has been. It's the coupling of people who don't mind mess with a child who constantly creates mess. I can tidy up only to find she's placed things back where she wants them.
I refuse to change my gentle ways. I refuse to parent opposite to my Attachment soul. But it is hard. All I want is to slap her face, send her to her room and throw away her toys. I feel it burning in my body. I feel my hand stiffen.
But I know what happened to the little girl inside me, battling her own demons. I grew to hate my parents, not trust them and seek ways to escape them. My house was more violent than a single slap every now and then, but one slap leads to the next. One moment of meeting MY need to hurt leads to more moments of choosing MY needs over meeting the needs of the family.
We are a broken family. Broken by anxiety, sleep deprivation and behaviours common to those diagnosed with autism. How is physical violence against one another going to replace, solve or divert any of the above? How is sitting on a stair step or naughty chair for 6 minutes going to change someone who is consumed by anxiety about death, monsters and failing?
Someone who sits in a classroom for hours pretending to be perfect only to come home, to her soft spot and lose her shit?
How does one get into the head of Eeyore and ask him kindly to melt into society? To be nicer to his parents? To accept the help around him?
If AA Milne didn't have an answer, I can't imagine how I'm to find one.
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is a rare multisystem genetic disorder characterized by unexplained periodic episodes or "attacks" of fever associated with additional symptoms including muscle pain (myalgia), abdominal pain, headaches and skin rashes. The specific symptoms can vary greatly from one person to another. The duration of the characteristic episodes can also vary, lasting anywhere from a couple days to one week to more than one month. Onset is usually during infancy or childhood. TRAPS is caused by mutations of the tumor necrosis factor receptor-1 (TNFR1) gene that encodes the 55-kDa receptor for TNF.
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